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Michelle from Philadelphia, Pennsylvania

Michelle’s Story

Updated November, 2007
It has been a while since I first told my story. It is now four years since I have been diagnosed with Stargardts disease. Thankfully, my life has pretty much remained the same as far as my vision goes. I am involved in a lutein study and have now graduated to yearly visits with Dr. Jacobson. According to all the tests performed at each visit, my eyesight has not deteriorated any further. Although, I notice subtle changes in my vision, I am always given a good report. I am still able to work as a registered nurse and drive.

I met a wonderful man who is extremely supportive of this condition I have. He has taken me to my appointments with Dr. Jacobson and has picked me up ten hours later. Yes, ten hours later. These appointments are emotionally and physically exhausting. The whole purpose is to find a cure.

We recently got married and are very happy. He helps read things for me if I can not see them and has adjusted all my computer settings so everything is easier for me to see. I remember when I was first diagnosed four years ago, I was told I might be legally blind in five years. Well, I am happy to report that my vision is stable at this time.

I am currently going to school for my BSN degree and am able to complete all the reading assignments with just my bifocal glasses. However, it seems I need my glasses alot more with just everyday activities. Whether I am reading or working on a computer at work, my face is very close to whatever I am reading. I have heard some comments like, you need to go to the eye doctor and get a better prescription. These comments used to hurt, but after a while they do not even bother me. I recently bought a new car and made sure I got all the bells and whistles. This might be the last car I drive, maybe not. I have a navigational system in it that talks to me. I can go anywhere I want. I was never able to do that before. It is a tremendous help.

I remember when I first told my story on this sight, I was sobbing as I was typing. I was frightened about losing my vision. I am actually sitting here typing this with optimism and hope for a cure soon. I will be walking this October in Philadelphia’s first Vision Walk to help fund research for retinal degenerative cures. My husband Steve will be there by my side.

My email address is: if you wish to contact me.

Original story
I am 29 years old and have recently been diagnosed with Stargardts disease.

My vision has been fluctuating for the past eight years. I would go from doctor to doctor and leave without a diagnosis, just a prescription for progressive bifocal lenses. Thank God for them, since they look like regular glasses. Somedays I needed them, somedays I did not, but I always carried them with me since I never knew what my eyes were going to be like on a particular day. These last two years, my vision has become quite an annoyance and my progressive lenses do not work as well. When driving, I can’t read street names until after I pass them and I always need to drive with my visor down to help block out the glare(I have been doing that for quite a while but now it makes sense why) When snow is on the ground the glare can be blinding.

I was playing Trivial Pursuit with friends with my glasses on and that was the night I realized I might be colored blind. I would read the question in the green category and my friends would say Michele you need to read the blue question. To me the green was blue. The same would happen for the pink and orange questions.I was quite bewildered.

I sought out a new doctor and he diagnosed me with cone dystrophy. There’s nothing we can do for you, just live your life fully, but be prepared to lose your license and register with the Foundation for Fighting Blindness. I was shocked and very frightened. Two months prior I got separated from husband and we are in the process of a divorce, and now I’m going blind?

I sought a second opinion at the Scheie Eye Institute and that is when I was diagnosed with Stargardts. I am enrolled in the Center for Hereditary and Retinal Diseases program and am on the waiting list to be seen. But the scariest , is that there is no treatment and no time frame on how much longer I will have my vision.

I am a RN and am currently working and still driving my car. I try not to think about this condition I have because when I do I get upset and frightened of what kind of future I might or might not have. I live each day thanking God I can still see the sky and watch the bids fly , but as for my future vision only God knows so I place my faith and trust in him.